George has PVL four limb cerebral palsy with total body involvement. He was born 13 weeks early. There were complications, and as we had lost twins at 21 weeks our consultant needed to deliver our baby for him to have any chance of survival. He was delivered by emergency c-section as he was stuck, breach, in my pelvis. When he was born, he was perfect, this tiny beautiful little boy. Our little rainbow baby.
The first few days were as you would expect for a premature baby, but on day six our world turned upside down. George had developed a grade one bleed on his brain. By day two the bleed had progressed to a grade three. We found out that our little boy had PVL (Periventricular leukomalacia) a form of brain damage that had resulted in a bleed on the brain. They believe that, due to how early he was born, he didn’t have enough fluid around his brain to protect it, and in the fight to get him delivered and safe, his brain got damaged.
What did this mean? How would this affect him? Nobody knew. We were in a world of the unknown. It could mean severe complex disabilities. It could mean a moderate disability that affected how well he walked. We just didn’t know. Of course, we had to be made aware of the worst case scenario, and I cannot describe the feeling in my gut, my heart or my head when I heard a consultant tell me that my little boy might never move.
It wasn’t long before we saw the effect of his damaged brain. His body was floppy but his arms were straight and fists were clenched tight. I wanted to understand more about PVL and CP, so I took to the internet. The panic that hit me when I saw what could be, was overwhelming.
When I was told that George would never talk, I was devastated. How could I protect him, help him, or give him what he wanted or needed, if he couldn’t tell me! Then something took over, I wasn’t going to just accept that this was his lot, there had to be more out there.
At four months, we started to access the help we needed. We got a private physio to help us learn how to hold and support George. At 10 months, we started to go to the school for parents. We would sing songs as we worked through a programme of movements, using the specialist slatted equipment in the centre. The songs would help George to know what we were doing, and the activities helped his brain to experience movements, that he couldn’t make independently. I then took George to a nursery, which had a specialist Conductive Education group, in Putney where we lived. When George was two, the conductor from the nursery told me about Pace. She told me that George would really benefit from their approach. I had to go and see for myself.
We met some of the Pace staff for an assessment with George. Tim (my husband) and I had a look around the school. It was scary and encouraging all at the same time. I could see just how much the children got from their time at school and I was amazed at what they could do. “He has to go there” I told Tim impulsively. It would mean we would have to move, leave Putney, and relocate. But that upheaval would be worth it…
By the age of two and half George and I were attending the Pace Parent and Child group in Chesham. I remember noticing the improvement in his ability to control his head, it took a lot of effort, but for a moment he could lift his head to look at me, he could look up and see the world.
George is now six and he attends the Pace School in Aylesbury. His development over the last four years has been outstanding. He has more control over his limbs, he can use switches (special buttons programmed to help him communicate). He has “yes” and “no” wrist bands that he uses to indicate his choice, by either looking at the relevant band, or even moving his hand to answer.
When George wanted something, or had something to say, he would physically get tense, I could tell that he was so frustrated. I would run around the house offering him anything I could lay my hands on. I would get annoyed with myself for not knowing, for not understanding. The more flustered I got, the less I understood and the more frustrated George would be. It was exhausting.
But now, George has learnt to use symbols to communicate. I remember being so afraid of his communication book. Pages and pages of symbols, and he was relying on me to understand. What if I still didn’t understand him, would I be letting him down? I had a session with one of the speech and language team at Pace, and it was like a weight had been lifted. I learnt quickly, although not as quickly as George, how to follow Georges’ eye pointing, turn the pages and confirm the words he had chosen. It was such a relief.
From his communication book, George progressed to a specialist eye gaze computer. I have always been proud of George and always will be, however his progress with his eye gaze has astounded Tim and I. You see Tim found it hard to accept that George needed all the technology and equipment, and I will never forget the first time Tim saw George use his personal eye gaze at home. I asked George what he wanted. Tim stood a few steps behind, almost hesitant or fearful of what the experience would be like. George navigated the categories, loaded his sentence, activated the computer to say: “I want Daddy.” Many years of hard work and determination by George, the Pace staff and by Tim and I have been alleviated through this technology and it has changed our lives.
Over the summer, George has come on leaps and bounds with his eye gaze. He’s gone from making choices to having conversation. He’s not only meeting his needs (which was my biggest fear), he’s engaging in conversation, learning, and gaining independence.
I now know my son, he’s cheeky and happy and really chilled out. I know what he enjoys and we connect. I feel like our relationship has grown. He’s enjoying school and learning more every day. His love of books is growing, and his taste in author is developing in line with this sense of humour!
We are excited about George’s future. I hope that one day he will read independently and continue his love of books. I want him to feel empowered so that he can experience as much of life as possible. The next big step, is an electric wheelchair, that he will control, and if I know my son, which I am proud to say I do, we all need to watch out!
You can help more children like George. Just £10 can help to pay for one page of a specialised PODD book. A specialist symbol book that enables children with complex disabilities to communicate. It will enable them to expand their vocabulary, gain more independence and engage in conversation.